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Here's to Your Health:  Needing help - mastocytosis  |
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KayB
True Blue Farmgirl
540 Posts
Kay
Del City
Oklahoma
USA
540 Posts |
 Posted - Oct 18 2010 : 7:19:17 PM
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Has anyone ever heard of this? They just diagnosed my 3-year-old granddaughter with it and everything on line is kind of scary. The military dermatologist is using his own time on Friday to meet with my daughter and her pediatrician about this. He did say it is hereditary although nobody on either side of the family has had it. While looking online I saw something called dermatopgraphia uriticara and it looks like the dermagraphia I was diagnosed with years ago, so now I'm wondering if she got it, like her eczema through me. If so and if it's as scary as it sounds, I feel so bad for her and wish someone had told me so I could give the kids some kind of medical heads up. If anyone knows anything or can give is a step in the right direction, it would be soooooo appreciated.
KayB
Life's a dance you learn as you go |
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Jana
True Blue Farmgirl
482 Posts
Jana
Eau Claire
Wisconsin
USA
482 Posts |
Posted - Oct 19 2010 : 04:13:49 AM
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Kay, I'm sorry your granddaughter is having skin issues. I'm not a nurse or anything, but I would guess that a lot of skin issues can be hereditary. I have psoriasis like my mom did, and I have lichen planus like my mom did. I also looked up the mastycytosis and the article I read said that about half of the kids diagnosed with it will get over it by puberty, so that is good news. Good luck!
Jana H. |
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marjean
True Blue Farmgirl
3851 Posts
Marsha
Deltona
FL
USA
3851 Posts |
Posted - Oct 19 2010 : 11:23:39 AM
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I know my homeopathic doctor has helped me through all my illnesses for the last 5 years. Even this awful skin infection I've had for 5 years. Ask the doctors if you could try the Wild Oregeno Oil on it to see what it does. It can't hurt. But, just mix it with coconut oil. DON"T USE IT STRAIGHT!!!!!! It burns open wounds like you wouldn't believe. But ones that aren't just get a little warm in my experience. Hoping you find the answers soon.
Farmgirl sister #308
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www.sunshinefarmgirlcoop.com |
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melody
True Blue Farmgirl
3318 Posts
Melody
The Great North Woods in the Land of Hiawatha
USA
3318 Posts |
Posted - Oct 19 2010 : 12:52:09 PM
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I am sorry to hear that Kay. Knowledge is power! Try to find out as much as you can about mastocytosis. I have read that children sometimes out grow the condition.
Be very careful about topical treatments though and be sure to check with your doctor before trying anything especially with kids-seems like they can be very sensitive when it comes to applying anything on their skin.
Best of luck!
Melody
Farmgirl #525
www.lemonverbenasoap.etsy.com
www.bythebayhandcraftedsoap.blogspot.com |
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KayB
True Blue Farmgirl
540 Posts
Kay
Del City
Oklahoma
USA
540 Posts |
Posted - Oct 19 2010 : 8:20:48 PM
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Thanks for the support, gals. I feel kind of guilty over all of this since it seems to have started with me. Nobody in my family has had any of this before me and the dermatologist I dealt with kept telling me it was hereditary but when I told her nobody else had it, she just said, "Oh, well, it had to start somewhere". Do What?!?!?! First I'm told is hereditary and then this. But this is the same gal who told me to use Vaseline on my skin because I seem to have the driest skin anyone has seen (I've been told this since I was 18). I'm just using coconut or almond oil and calling it good. The next break out will be treated with sea buckthorn berry lotion. I read about that in a magazine.
I just really want to get her through it as easily as possible. It seems like her baby sister might have it, too. Payton's spots just aren't dark like Shyanne's. Argggggggh! It is just so frustrating, but the support I get here helps a lot.
KayB
Life's a dance you learn as you go |
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fiddlegirl89
True Blue Farmgirl
232 Posts
Kayla
Dunnville
KY
USA
232 Posts |
Posted - Oct 22 2010 : 3:03:44 PM
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I don't want to sound like a commercial or anything, but my mom makes and sells milk soap. We've had several people contact us after using it with great stories of how it helped their skin condition. I have no idea how it would effect this problem, but I just thought I'd let you know. One lady bought our plain unscented soap for her sister, who had a bad skin condition on her face, the doctors had done everything they could for it, and it just wouldn't get better. The lady used our soap and it was clear in 2 days. Ok, so this really does sound like a commercial!!! If I were getting a soap to help with a skin issue, I would use tea tree. We also have lotion bars, bath salts, and lip balm in tea tree (and lots of other varieties.)
[end commercial]
http://www.custerfamilyfarm.com
Direct link to my blog: http://custerfamilyfarm.com/blog1/index.php?blog=3 |
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KayB
True Blue Farmgirl
540 Posts
Kay
Del City
Oklahoma
USA
540 Posts |
Posted - Oct 22 2010 : 7:00:37 PM
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Kayla,
My daughter is meeting with the dermatologist and allergist next week and then we will find out where we need to go from there. I have offered to make laundry soap for them, but don't know anything about body care. Once we find out something, you may be hearing from me for some product.
Thanks so very much.
KayB
Life's a dance you learn as you go |
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msdoolittle
True Blue Farmgirl
1143 Posts
Amanda
East Texas
USA
1143 Posts |
Posted - Oct 23 2010 : 09:06:31 AM
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Kay,
I don't know anything about your granddaughter's condition, but I can tell you that after diagnosing myself with eczema, I got rid of my commercial cleansing bars (notice that I did not say 'soap', because they are not truly soap, they are detergent). I started off by using Dove Sensitive skin bars (that's all I could find at the time that was approved by the eczema website), and that was better, but then I switched to homemade goat's milk and cold-process soaps. My skin is SO much better. Also, I use a moisturizer within 3 minutes of getting out of the shower. When I have an itchy skin flare up (which is a result of me skipping a shower), I go back to 2 short showers a day, and apply moisturizer in a good thick layer, esp. to the affected areas.
Anyway, I said all of that to say, it wouldn't be a bad idea for your g-daughter to avoid commercial skin products, especially those products made just for kids. This certainly wouldn't hurt her to do this. I just don't trust the commercial products anymore, as they totally dried out my skin and made my condition worse. My face used to peel and crack after every shower, and now it doesn't! My kids only use the homemade soap for hair and skin now.
:0)
P.s. Right now I am using CeraVe and Olay Quench lotion, which works, but has too many chemicals in it for me; however, they do work. I also have a great product which is 100% vegetarian and all-natural, but I am running out of that.
FarmGirl #1390
www.mylittlecountry.wordpress.com |
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KayB
True Blue Farmgirl
540 Posts
Kay
Del City
Oklahoma
USA
540 Posts |
Posted - Nov 03 2010 : 7:54:38 PM
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I've been using homemade soaps from local makers around here. I make my own laundry soap and use vinegar to rinse. I'm going to send the recipe to my daughter. I have used CeraVe and it is good, but I'm preferring either coconut oil or almond oil. I have found goat's milk soap that is wonderful. I can't wait for Whole Foods to open here so I can get a good variety to choose from. At one point, the dermatologist told me my skin was so dry I should use vaseline on it - UGH!! I refused and the eczema is pretty well cleared up.
I'm just hoping we can get Shyanne through this. They just found out they are moving to Europe next year and I hate to say it, but some of the doctors over there are fantastic, so maybe they can help her. I'm just hoping baby Payton doesn't also have to go through this.
DD said they put Shy on allergy medication and she's always drowsy and grumpy. I explained that now all of sudden she feels like crap and all she knows is that Mom and Dad are giving her the stuff that's doing it and to just be patient.
Thanks so much for your advice.
KayB
Life's a dance you learn as you go |
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sherrye
True Blue Farmgirl
3775 Posts
sherry
bend in the high desert
oregon
USA
3775 Posts |
Posted - Nov 04 2010 : 07:36:19 AM
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i am hoping to add just a thought here too. i am hard pressed to find a lotion on the market that does not use alcohol as a spreader. no matter how it is made or used it is still alcohol. then you find mineral oil. mineral oil or derivatives have a molecular size larger than the skin. it does not enter it rides on top. it is sticky so we feel lubricated. it attracts dust dirt and dead skin. its sticky sitting there on your skin. what about shampoos??? most are running down your body in the shower. how about liquid dish soap, all are irritating to your skin. laundry soap is huge for irritating. there are NO regulations on what is in laundry products. all they have to say is it is a trade secret. it is stronger better more yummy smell they do not have to tell you how why or what is in there. i would hope that folks could try to read labels more. many of the chemicals used in agriculture for bugs and weeds are used in laundry and personal care products. the fda is made up of older dow and monsanto boys so its all connected to greed. just a thought. i do make a lot of my stuff at home. but these days there are better choices out there. such as trader joes. whole foods and yes even the stores down the road are carrying more of the good stuff. happy days sherrye
the learn as we go silk purse farm
farm girl #1014
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sherrye
True Blue Farmgirl
3775 Posts
sherry
bend in the high desert
oregon
USA
3775 Posts |
Posted - Nov 04 2010 : 07:44:51 AM
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i googled the condition. i have to offer my opinion. you can take it or leave it. after rereading your posts. i am thinking there is something in their environment that is triggering a severe histamine behavior. remove the trigger and the skin disorder may leave. i know how hard this is to do. i had to do it for myself. since its not your children it mat not happen. but after reading on the skin condition, i would say you have auto- immune disfunction and hyper histamine reaction. since the spots stain the skin i would hope for homeopathic treatment for histamine levels and cleaning up fragrances chemicals etc. in home. this is only an opinion. sent with love and hugs. sherrye
the learn as we go silk purse farm
farm girl #1014
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KayB
True Blue Farmgirl
540 Posts
Kay
Del City
Oklahoma
USA
540 Posts |
Posted - Nov 04 2010 : 8:15:56 PM
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Thanks so much too all of you gals for your insights. We are working on it together and we will find a way. Like I said, I seem to be the "carrier" for want of a better word. My dermatologist told me that everything I have is hereditary and I told her nobody in my family before me had any of this but both of my girls and 2 of my granddaughters have been treated for the eczema. My allergies, to mold and dust mites, throw me into asthma attacks when I'm overloaded. I didn't know I had allergies until my mid-30s when I kept having these attacks in Arizona. They use swamp coolers for cooling and we also had "monsoon season" twice a year. The coolers were never cleaned and when you get that kind of rain - well, I find out after 3 trips to the ER that it's allergenic asthma.
Shy gets to go to the allergist in December. At the end of December they are moving up here, and trust me, we go with no fragrance and homemade cleaning products so we know what we're getting.
Sherry, a friend and I found a wonderful shea butter fair trade lotion that looks like it'll be wonderful. I wish I could remember the name of it, but I will find out tomorrow and get back to you. They have lotion, body wash, shampoo and conditioner. It all comes in really big bottles and they price is really good.
Thanks to all of you for your concern and advice.
KayB
Life's a dance you learn as you go |
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sherrye
True Blue Farmgirl
3775 Posts
sherry
bend in the high desert
oregon
USA
3775 Posts |
Posted - Nov 05 2010 : 07:20:17 AM
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goodmorning kay, i recieved your email. that is so great that you are clean from chemicals in your environment. that is a big job to keep up with. things creep in my house so often. i am always having to look and say ok what am i smelling. since it sure appears hereditary you would think dr.s could figure it out. huh i am going to go to the ciin.org site for some research i need to do. i will see if they have any info. hoping you all have a happy day sherrye
the learn as we go silk purse farm
farm girl #1014
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sherrye
True Blue Farmgirl
3775 Posts
sherry
bend in the high desert
oregon
USA
3775 Posts |
Posted - Nov 05 2010 : 08:02:24 AM
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the shey butter sounds great. i was trying to find other common denominaters for you all. what about water supplies? chlorine and fluoride in water you shower in and drink? just thinking sherrye
the learn as we go silk purse farm
farm girl #1014
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KayB
True Blue Farmgirl
540 Posts
Kay
Del City
Oklahoma
USA
540 Posts |
Posted - Nov 05 2010 : 7:21:20 PM
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Nothing common right now other than relationship. They live in Texas and we live in Oklahoma. Shy was born in Kansas. They come here to visit some, but I still think it's something we just have. What's odd is the fact that no one else had it before me. When I said something about that after being told it is hereditary, the doctor just said, "Well, it has to start somewhere". And people wonder why I get so frustrated with the medical community.
KayB
Life's a dance you learn as you go |
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Here's to Your Health: Needing help - mastocytosis |
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Needing help - mastocytosis
